J-Pouch questions from new member

[BeckyW]

Hi. First I’ll give you a little background on my situation. After having fought unresponsive UC for 5 years, on Nov 30, 06 my colon & rectum were removed & my J-pouch “built”. On Jan 22 my ileo was reversed (they did this a bit early as I had dealt with two blockages on 12/31 & 1/17), but I was back having surgery Jan 29 to repair a leak where I was pieced back together & adhesion removal. So, I am basically 7 weeks out from my last surgery & I have a lot of questions for you. (This forum is so much better then the info I have received from my surgeon, at this time I have been waiting a week for them to call me back on my questions).

I am still having 10+ BMs a day. I was lead to believe that I must have pouchitis, but I don’t have any of the other symptoms, & I don’t want to take antibiotics if not needed. Have any of you had pouchitis where you had no symptoms other than number of BMs? (This amount is typical since my surgery & is not diarrhea, just a lot of small BMs).

Does the amount of BMs decrease over time? I was made to believe by my surgeon that after 4 weeks of surgery I should be down to 6 or less per day. I am hoping that others have taken longer to get there, and this is not the best it will ever be for me. I had been taking 6 Imodium a day, but I stopped & have not noticed a change in my BMs. I do try to hold them as long as I can but this often leads to my not making it to the bathroom in time. I also just started eating Metamucil fiber wafers after lunch.

I am often up every hour or two at night having BMs. The longest I have ever slept straight through since surgery is 4 hours. Does anyone have any helpful hints to lessen this so I can have a decent nights sleep?

I am taking VSL #3, approx 6 capsules per day. At what point can I reduce this, or is it common to stay at this level always? Also, I take the pills as opposed to the powder mix. Is one preferable over the other?

I read an article that says we can train our bowels by drinking an ounce of prune juice before a meal then a hot liquid after. Has anyone successfully been able to train their pouch?

I saved the best for last. I have horrible external hemorrhoids & believe that I also have a fissure (lots of bleeding/clots one day back in Feb). Has anyone had either surgically repaired after having a J-pouch? Does anyone have any tips for how to alleviate the pain? (I use A&D or Calmospetine after each BM & I try not to strain)

I can’t tell you how happy I was to find this website. I have really felt “on my own” after surgery & it is so wonderful to see the support you all provide each other and read stories from others going through the same thing.

I thank you sincerely for your time and any info you can share with me. Becky

[Paully's5.0]

Becky -

I'm a j-poucher too! I think your surgeon is a little over-zealous by saying 6 BM per day (especially in a 24 hr period). It was easily 6 months before I could sleep through the night without getting up.

If you have more of an "urge" to use the restroom, become uncomfortable or possibly have blood in your stool, then you most likely have pouchitis. Otherwise 10 a day after 7 weeks seems pretty reasonable to me.

Everyone's body is different though, you just have to be patient with it. I think the less you think about it, the sooner your forget the number of times you go. If I have to use the restroom for a numero uno, I just pop-a-squat as well since I'm already there. I can empty my pouch anytime I want, so it's pretty easy to take care of business when you want to, rather then waiting for it to make a "call".

I'm 4 yrs (wow that went fast) post take down, I still go 4-10 times a day depending on what I ate, how much I ate, and of course.....what I've been drinking;)

Oh....try taking Immodium around 7-8pm, and try not to eat anything after 8pm, should help get you a longer night's rest before having to get up.

Oh (#2) To "train" your pouch, try to hold it as long as you can. I've had urges, and have been able to hold them for another hour or two without to much discomfort. The urge can get uncomfortable for a few minutes, but alot of times that urge is just gas moving around.

[Amy Nichols]

Hi Becky,

Give yourself permission to heal and adjust…the good thing is you are “disease free” and your body can now heal, without all the UC activity impacting your immune system. You’re only 7 weeks out (me too!)

I had a J-pouch for the last 15 years and recently had it converted to a Kock pouch due to complex fistulas and incontinence that did not respond to medicinal therapies. That being said, I loved my J-pouch. It took about 3 years to feel confident and regulate my bowel movements to about 6-8x/daily.

Overtime, your pouch will expand in size and your ability to retain more waste will also increase thus reducing the sense of urgency. Some foods will increase/decrease production but enter foods slowly, especially since you’ve had a few blockages. I’ve also experienced several blockages, both with my J and ileostomies.

With my J-pouch, I was able to finally sleep through the night after 10 years. I was going to the bathroom at 11:00 pm, 2:30 and 5:30 am but by year 10, I was able to sleep to 5:30 am.

I’ve had hemorrhoids and pouchitis. Had the hemorrhoids removed surgically (ouch!) and treated the pouchitis with Flagyll, a very strong and effective bacterial antibiotic. My rendition of pouchitis felt as if I had golf balls in my pouch-I new it was internally swollen and usually coupled with increased diarrhea.

Please stay hopeful! With my J-pouch, I’ve completed 2 full and 6+ half marathons, (within 5 years of the surgery), completed 6+ triathlons, hiked the Rocky Mountains, joined my husband in bike races, and stayed very physically fit and active. I was able to eat and enjoy all foods over time. It was a great quality of life that I plan to have with my K-pouch, as well.

Give your body time to heal and know that you’re beginning a whole new chapter in your life. Trust me, the mind-body connection is strong so try not to get discouraged and take it one day at a time. Six months from now, you’ll be in a different place.

Feel free to e-mail me privately.

Bottoms Up,
Amy

[TheFallGuy]

Hi Becky,
Hope your bms go down but the one thing I am concerned about was the leak they repaired and have been on a number of medical websites and the one thing that comes up in everytrhing I have read so far is the success of a J pouch after corrective surgery to repair complications..most doctors state that if they have to repair the pouch it as a tendency not to function as well in some patients and dont know if you went through a 1, 2 or 3 step procedure that might also had an effect on the outcome of your surgery and even read on one website that the skill of the surgeon is important and because of the complexity of the surgery....I hope this isnt true or any of these factors are the cause of your problems and pray this surgery works out for you but these are things to know about no matter what road you decide to travel

Jeff

[TheFallGuy]

Just wanted to add that I remember when I was going for the second surgery to have ny J pouch constructed just right before they wheeled me in the operating room my doctor all of a sudden comes out and says Jeffrey when I was in there the last time it didnt look like your small intestines couldnt reach to your rectum so their might be a posssibility that you might wake up with a permanent ostomy bag and if I didnt have that information I probably been upset if they would have woke me up with the bag on still after surgery thinking why do I have the bag still on and ya know and Im not supposed too.....Plus knowing that things can go wrong can help you prepare to stop or prevent other things from happening sometimes .....give it a year or so with the pouch before doing anything drastic and my doctor surprised me the other day when she said 2 years.....reason why I say how many steps in your surgery its found that people who have the 3 step surgery have the highest sucess rate compared too the one and two step procedure

Jeff

Jeff

[verytallmichael]

Becky, hang in there. I know that doesn't sound very original, but think about what just went on in your body. An organ was just removed! Take it easy on yourself.

I had this done back in 1992 and it was tough in the beginning. I would often sleep through an accident because I was so exhausted. I highly recommend taking imodium and metamucil fiber, sugar free. Ask your doctor first though. The fiber soaks up the liquidy waste quite well and the imodium, well, you know the commercials.

My life rocks now. I have no complications, I am a high school teacher, and I have never looked back. I have complete continence and for me that is the number 1 priority next to health. I will never go back to the hell I lived with UC.

Keep in touch and let me know you do. You will learn little tips and tricks along the way--some will work for you and other won't